New here, I could really use some advice

[Nixaura]

Hi, I have had doctors say they think I'm on the spectrum, but I ignored them. I am almost positive they were right now. Recently I have gotten to a place in my life where I feel safe enough to stim, in fairly inconspicuous places. It's very hard to not do it all the time, because of sensory overload. I can be wearing ear plugs and sound cancelling head phones and still get very overwhelmed. I am not allowed to wear any kind of ear protection or sunglasses at my job, and even though it is only part time, I feel it's so far above what I can handle long term I don't know what to do, it has bright fluorescent lights, I have snuck ear plugs by putting my hair in the way, but It's really not enough. I want to stim during work, I don't know how to do that without endangering my job, and when I start it ends up being fairly involuntary, and doesnt stop for a while, and can get intense, ive even hurt myself. This has happened at work (the involuntary stim) I think only a few people saw though. I'm not sure it is autism, but all the signs fit, I'm afraid to get a diagnosis, because I don't know what to expect. Or how to deal with this, if it were up to me I would probably constantly be stimming. I haven't lived on my own before this, I worry about being able to. I'm staying with friends, but even though they've been great about it, it is so ridiculously stressful, I feel I am seriously putting them out. Even leaving the house hours before I go i get very scared, I feel high functioning in some way's but others not at all. I just turned 25. Please any advice on a course of action would be greatly appreciated. I know that's old for a diagnosis. Is a diagnosis worth getting? Is there a way I could stim more? Or get some kind of help? Sorry for dumping all this out here.

 

[Nitro]

Take a look around and get comfortable. I'm sure you will find our membership both helpful and friendly

 

[When In Rome]

 

[Marmot]

Hi Nixaura, and Welcome

There’s not a single question or concern in your introduction (and I count at least six, initially as I’m reading) that have not been addressed nor answered in a dozen or more posts here with several hundred responses to each of them in turn. So in short: You’re in the right place.

Fortunately / unfortunately, we’re all different flavors in life: With different circumstances, abilities & inabilities etc….. So although your questions are the same, there’s going to be a different answer and/or solution to them for each of us.

The keyword search tool here is crazy helpful to find specific posts on specific topics (ie: "stimming" / "earplugs" / "living situation"), and when you need a laugh, go into the 'obsessions & interests' forum and check out what people are collecting & obsession over these days. -I always get a kick out of that...

 

[xudo]

Welcome

 

[Nixaura]

Thank you!

 

[MrSpock]

Hi Nixaura, and welcome. The issues you seem to be concerned about are things I don't know much about. I do know that 25 isn't so very old for a diagnosis, I was 48 when I found out only a few months ago, and others on here have found out in their 30's and 40's as well. And don't be 'sorry for dumping all this out here'... that's like walking into a restaurant and apologizing for being hungry. I didn't make this website, but I'm so sure that when they did, they were hoping that people like you would come here. And here you are, perfect!

 

[Judge]

Welcome to AC.

Self-awareness is a big deal. The first step you can make towards helping yourself while understanding whatever limitations you may have.

Work is always important and not easy to obtain. No secret there. Though that said, IMO it's worth accommodating your autism than attempting to accommodate your work. A job you may have for weeks, months or years. Being on the spectrum is for life.

Sadly none of this became a concern for me until my mid-fifties...a mystery for me to unravel. But better to know and be able to do something about it better late than never.

 

[toothless]

Hi, I have had doctors say they think I'm on the spectrum, but I ignored them. I am almost positive they were right now. Recently I have gotten to a place in my life where I feel safe enough to stim, in fairly inconspicuous places. It's very hard to not do it all the time, because of sensory overload. I can be wearing ear plugs and sound cancelling head phones and still get very overwhelmed. I am not allowed to wear any kind of ear protection or sunglasses at my job, and even though it is only part time, I feel it's so far above what I can handle long term I don't know what to do, it has bright fluorescent lights, I have snuck ear plugs by putting my hair in the way, but It's really not enough. I want to stim during work, I don't know how to do that without endangering my job, and when I start it ends up being fairly involuntary, and doesnt stop for a while, and can get intense, ive even hurt myself. This has happened at work (the involuntary stim) I think only a few people saw though. I'm not sure it is autism, but all the signs fit, I'm afraid to get a diagnosis, because I don't know what to expect. Or how to deal with this, if it were up to me I would probably constantly be stimming. I haven't lived on my own before this, I worry about being able to. I'm staying with friends, but even though they've been great about it, it is so ridiculously stressful, I feel I am seriously putting them out. Even leaving the house hours before I go i get very scared, I feel high functioning in some way's but others not at all. I just turned 25. Please any advice on a course of action would be greatly appreciated. I know that's old for a diagnosis. Is a diagnosis worth getting? Is there a way I could stim more? Or get some kind of help? Sorry for dumping all this out here.

hi nixaura,welcome to AC! with a diagnosis you might be able to stim more if you made your work aware of your diagnosis and explained the need for stimming-as long as it doesnt endanger your job to,companies should make reasonable adjustments for people with disabilities,it depends on the company really despite being part of the law.

just a couple of things of note,you said you feel high functioning in some ways and in others not at all, if you are diagnosed as having aspergers or high functioning autism;you are 'high functioning'- autistic functioning;in this case high functioning means you have intelligence outside of the learning disability spectrum [better known as intellectual disability in the US] and it is this impairment [or lack of] which makes you low or high functioning autistic-the impairment [or lack of] makes the autism present with traits and difficulties more common to either functioning level-such as significant speech and language delay,requiring nappies even as adults,severe challenging behavior, needing physical and verbal help with every aspect of life,requiring lifelong 24/7 1-1 or 2-1 support,struggling to interact as your stuck in your own world much of the time [ie low functioning]...academically quite brilliant, good speech and language capacity,good at technical things,might need some support as an adult but often will move into independant living [high functioning].
low functioning or high functioning autism doesnt refer to general ability or inability to do things.

the other thing that stuck out for me,you think your age is old for ASD diagnosis, its not old as there are still so many aspie adults that are awaiting assessment or are remaining undiagnosed as yet because aspergers didnt really get recognised well till about 1995.

 

[xudo]

I know that's old for a diagnosis. Is a diagnosis worth getting?

It's not that old for a diagnosis. I was diagnosed last year at 30. I would say that a diagnosis is always worth getting (if possible) as it may open up services to you that are out there to help adults on the spectrum.

 

[Elemental]

Hi: All the above advice is excellent so nothing to add except "Welcome"

 

[Ambi]

Hi, I have had doctors say they think I'm on the spectrum, but I ignored them. I am almost positive they were right now. Recently I have gotten to a place in my life where I feel safe enough to stim, in fairly inconspicuous places. It's very hard to not do it all the time, because of sensory overload. I can be wearing ear plugs and sound cancelling head phones and still get very overwhelmed. I am not allowed to wear any kind of ear protection or sunglasses at my job, and even though it is only part time, I feel it's so far above what I can handle long term I don't know what to do, it has bright fluorescent lights, I have snuck ear plugs by putting my hair in the way, but It's really not enough. I want to stim during work, I don't know how to do that without endangering my job, and when I start it ends up being fairly involuntary, and doesnt stop for a while, and can get intense, ive even hurt myself. This has happened at work (the involuntary stim) I think only a few people saw though. I'm not sure it is autism, but all the signs fit, I'm afraid to get a diagnosis, because I don't know what to expect. Or how to deal with this, if it were up to me I would probably constantly be stimming. I haven't lived on my own before this, I worry about being able to. I'm staying with friends, but even though they've been great about it, it is so ridiculously stressful, I feel I am seriously putting them out. Even leaving the house hours before I go i get very scared, I feel high functioning in some way's but others not at all. I just turned 25. Please any advice on a course of action would be greatly appreciated. I know that's old for a diagnosis. Is a diagnosis worth getting? Is there a way I could stim more? Or get some kind of help? Sorry for dumping all this out here.

Obviously, I am not a doctor, so please take this with a big grain of salt! But, if you are uncomfortable seeking a diagnosis at this time, perhaps you could ask about anxiety? I have read that a lot of people on the spectrum can experience anxiety, which would increase the urge to stim - maybe a low dose of anxiety medicine would help, or other techniques at reducing anxiety. On the spectrum or not, there does seem to be anxiety, especially the scared feeling you get before leaving the house, that can really get in the way. I am a big hypocrite - I have a ton of anxiety, and I have done nothing but stim to "get rid" of it - for me, it holds it at bay, but honestly, I need to focus on my health and exercise to truly counteract it more effectively, then I think my stimming would not be so disruptive of getting on with life.

 

[Nixaura]

Hi Nixaura, and welcome. The issues you seem to be concerned about are things I don't know much about. I do know that 25 isn't so very old for a diagnosis, I was 48 when I found out only a few months ago, and others on here have found out in their 30's and 40's as well. And don't be 'sorry for dumping all this out here'... that's like walking into a restaurant and apologizing for being hungry. I didn't make this website, but I'm so sure that when they did, they were hoping that people like you would come here. And here you are, perfect!

Thank you, and it is good to know that this isn't a late diagnosis, this whole thing is overwhelming.

 

[Nixaura]

Welcome to AC.

Self-awareness is a big deal. The first step you can make towards helping yourself while understanding whatever limitations you may have.

Work is always important and not easy to obtain. No secret there. Though that said, IMO it's worth accommodating your autism than attempting to accommodate your work. A job you may have for weeks, months or years. Being on the spectrum is for life.

Sadly none of this became a concern for me until my mid-fifties...a mystery for me to unravel. But better to know and be able to do something about it better late than never.

I almost feel like this is the only job I could ever have, and it is to much a lot of the time. What is imo? Im not sure how to find my limitations, I'll look into that, thank you for your time and advice. I'm sorry you didn't get clarity till later, that must have complicated matters.

 

[Judge]

I almost feel like this is the only job I could ever have, and it is to much a lot of the time. What is imo? Im not sure how to find my limitations, I'll look into that, thank you for your time and advice. I'm sorry you didn't get clarity till later, that must have complicated matters.

I know what you mean. I've had only a handful of jobs in my lifetime and while never fired from them, the most important ones I lost through shareholder decisions. The whole process of looking and applying for jobs has always been a nightmare for me.

At the present I'm precariously self-employed, though it gives me incredible "peace of mind" not being responsible to anyone but myself.

IMO means "In my opinion."

Self awareness for me has been a long journey. Frankly I'm into my sixth year of discovering my own autism. It hasn't been easy, but it remains enlightening to slowly look back on all my social interactions and understand why they can be so difficult at times. But I temper what I learn in that not all explanations automatically have solutions. Like so many others here, I have some traits and behaviors I can work on if I choose to change to some degree, and others that are neurologically "hard-wired" that I cannot change at all.

Somewhat like the "Serenity Prayer":

"God, grant me the serenity to accept the things I cannot change, Courage to change the things I can, And wisdom to know the difference."

 

[Elemental]

My experience was: Diagnosed by educational psychologist @ 35 years in 1999 with "high function" autistic spectrum disorder with characteristic traits like: Sensory hypersensitivity (migraine, dermatological intolerance) extreme literal interpretation of meaning, prosopagnosia (face blindness) communication problems (defensive frustration = "hostility") inherent gullibility through misunderstanding intent & consequence.

I sought reassessment in 2014 when I couldn't get a replacement copy of my original diagnostic report; The college that organised ny 1999 assessment said that after 18 years, reassessment would be advised as "support needs may have changed"

I got a GP referral & saw an autism assessment agency + locum psychiatrist. The background interview left out me being one of 4 previously diagnosed members in my family (only knew of one other member in 1999) & much other relevant, significant stuff was omitted. I then had one 40 minute & one 45 minute interview with the locum psychiatrist which bore no resemblance to any AQ - Autistic Quotient- test I ever undertook & I was waiting for this to begin, all through the meeting!

My mum participated via phone & nothing she wanted to say about my development over 5 years was allowed. This discriminated because "higher function" ASD kids often don't manifest symptoms or traits after this age, whilst incidents she could recall at that age were misrepresented in my report into incoherent nonsense & so meaningless.

At my post diagnostic meeting, the locum psychiatrist said I am not affected by my previously diagnosed ASD; I actually "don't fit the clinical criteria" which was rewritten since my original testing; Neither the college suggesting I seek reassessment or the diagnostic agency that undertook it, advised me about these changes, which in 2013 also saw consigned to obliteration, the term "Asperger's Syndrome"

I never once foresaw the possible outcome of an ASD diagnosis denial: My most recent ASD AQ tests marked me: 164/200 neuro diverse, 43/200 neurotypical.....That's a bit changed from my last test score but not by much.

I asked the locum psychiatrist about my 1999 diagnosis, which I know from reading, research & self education, to be entirely authentic? His response: A shrug.

I had to leave rapidly, I felt in turmoil.

I had a very common: Shock>Denial>Acceptance >Accommodation response to my original diagnosis & excepting an educational award, I had zero practical or emotional support then or since. I never got told about other resources available or the importance of educating self awareness about ASD.

This project I began much later & understanding ASD better, I realise my diagnosis was the first thing ever, to make truly coherent sense of my experience & outcomes & in the years since, learning we are four spectrumites in my family & that revelation was massive. It meant other family members revising their own previous attitudes & opinions.

The locum psychiatrist said I have a diagnosed but non-specified personality disorder, as manifest in distrust & hostility. I say their undertaking of my reassessment was flawed due to manipulation of data through omission, that I received barely 1/3 of the time in interview I'd been advised & that they are just wrong because there is no doubt about the authenticity of my original diagnostic tests, which were lengthy, varied & involved practical as well as intellectual tasks.

Reassessment hasn't affected my welfare entitlement although it might; I rejected the new clinical conclusions & requested a second opinion at the post diagnostic meeting in April 2016. Their last letter addressing the formal complaint I made about my reassessment experience denies any lack of care & consideration. They say my reassessment "Was in no way related to previous diagnosis that I may or may not have received"

That choice of words stung me hard: "Crassly provocative & inherently disrespectful" is what my last letter to them said. In taking no account of my already diagnosed autism in their procedures, they gave zero thought to how an autistic person might feel or respond to having that reality challenged or denied & it never occurred to me. I've asked for a list of the questions verbalised to me in my assessment & was told I wouldn't understand the medical jargon, then they said it would "breach licence copyright" if I had that info.

This is an ongoing, unfinished issue still & it's a crazy situation I feel I'm in...apologies for the length of the post, but it illustrates the diversity of experience of ASD & diagnosis. Good Luck on your journey.

 

[Rocco]

Welcome aboard